I never realized how hard it is to find support for something until I needed it. Down Syndrome is a scary enough diagnosis to be given, but then feeling like your going through it all alone is even scarier. When the twins were born, I didn't know anything about Down Syndrome, or premature babies, or Necronizing Entercolitis, or colostomy care, etc....
It took several months (about four or five) before I even found someone local to me who had a child with Down Syndrome. And that happened to be twin girls, one with Down Syndrome and one without. It was so nice to relate to this mother and find we had alot in common.
I have to say that the best support I got then, and still yet today is from my online friends. I have met so many people online that have become like my second family. I have met a few of them in person and that is really exciting to see the person in the flesh after seeing lots and lots of photos first. I find it comforting that if I'm having an issue or problem with something I can go and post on my favorite site DownSyn and I'll have an answer almost immediately. And now that I've jumped on the Facebook wagon, there too I enjoy keeping up with friends I've met online who have children with Down Syndrome. Last August I was sooo thrilled after searching and searching to find an online forum for parents with multiple children with Down Syndrome. I have found a few families who have identical twins both with Down Syndrome from that site. We are so rare that is so nice to find others.
I enjoy speaking to my online friends, but I was still wanting to get something going locally. I read books, planned out when to meet, what to call our group, and I started to try and find other families interested. One of the last things on my "To Do List" was to contact our local Arc organization. I called and spoke to Rachael, she was thrilled that I was trying to start something in the area and said I should consider working with them. I didn't know what the Arc was exactly and I knew they dealt with all types of special needs and I was just looking to stay in the Down Syndrome family. After alot of prayer I realized that God had opened the most amazing door for me and I accepted the offer to come on board with The Arc of Jefferson County. I have been their Executive Director now since June of this year. I have been blessed to be able to use their wonderful facilities which include an 8 acre camp with playground, pavilion and 12 picnic tables, fenced in pond, classrooms, complete kitchen and dining hall and much more. This has been such a blessing and yet I am still having a hard time getting families to come to the support group meetings??? I don't understand it to be honest. I am hoping that word of mouth gets around and more people will come.
I am so blessed with the support I've gotten this far, and I hope that I can support others in the future. Any suggestions or comments on how you have gotten your support groups to grow??